Welcome to the Louden on Autism Q & A: Volume 3. Over the course of the next few months, I’m going to be using questions submitted by my website visitors, readers, autism advocates, parents and others to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about struggles with school and an issue with discipline.

QUESTION

My son is 47 years old and he has not been tested for autism, but he is the textbook case of Asperger’s. He is working & living independently but needs support with living skills; housekeeping, laundry, money matters & bills, and he has a relatively recent lack of personal hygiene. He agreed to find a diagnosis while looking into getting disability for his anxiety, which he takes medicine for, but since that was declined he is reticent about testing. What are your thoughts?

ANSWER

I’m strongly in favor of seeking disability in general. The possible foundation of reliable income and potential medical insurance can reduce the general anxiety someone struggling with mental health may feel, and that can help improve their ability to operate daily and alleviate some of the “worry” they may constantly feel.

It’s important to remember that the process of applying for disability is intentionally harsh – it has many checks to ensure it doesn’t go to people who don’t need it, and so it’s actually likely you’ll be rejected once or many times. It’s expected, and you’re expected to persist if you actually need it, which unfortunately can be very difficult for those of us on the spectrum. We often take “no” at face value, and assume that systems like these are impartial rather than oppositional.

Seeking the diagnosis is, to me, very important. It gave me tools to better understand my challenges as well as a secure point from which to ask for accommodations. Much of the world is willing to say “yes” when you say something like, “I’m autistic and would like to be part of the early boarding group for this flight so that I’m not too close to so many other people for my sensory issues,” and similar. It may also help with the application for disability.

It may also be worth looking for experts in the application in your area. The process has grown complex, and there are often agencies and individuals who specialize in helping you with it and understanding the challenges it poses.

I am absolutely in favor of seeking whatever help you can get, in whatever form. There’s a world of difference between treading water and having a life preserver. While neither puts you on shore, you’re much more likely to keep your head above water and have the energy to work on improving your situation if you have that life preserver.

Some of you may have seen the recently released dashboard camera video of the Philando Castile shooting. I’m not sure I’d recommend it. It is, after all, the video of someone being killed.

When I saw that video, I was afraid. I heard the instructions the officer gave. I heard Castile’s responses. He said, “I wasn’t reaching.” The last thing he said, after being shot, was an attempt to explain to the officer that he was following instructions. And I saw myself in every action Castile took.

The officer gave him two instructions. The first was to get out his identification and then after being made aware of the legally possessed firearm, not to take out the gun. Castile, from what we can see in the video, claimed to be complying, reaching for his identification, while reassuring the officer he wasn’t getting his gun. The officer, on the other hand, seemed to think “don’t reach for your gun” was an order to also stop getting the identification.

If I was Philando Castile, I would not have interpreted it that way.

It just wouldn’t have occurred to me. A traffic stop is a high-pressure situation even without a gun involved, and you’re just trying to make sure things don’t escalate. After seeing that video, the one thought I had in my head was “If that had been me, I’d have done the same thing, and I’d be dead too.”

And the officer was found “not guilty.” Because a reasonable officer in his situation would also be afraid, and being reasonably afraid is a justification to use lethal force.

There are very few crimes that we punish with death in the U.S. Typically murder, and then, only when proved “beyond a reasonable doubt.” But we also punish “frightening a reasonable police officer” with death. And we instruct juries that the officer was trained to do this, and that as long as the jury agrees a reasonable police officer could be afraid in that situation, they did the right thing and did not commit a crime.

So what does that mean for me? I’m autistic. My body language isn’t right. I might come off as on drugs, or trying to hide something, or just challenging their authority. I take instructions literally. I’ve already had back-up called on me once for an expired license place, because “please step away from your car” was performed literally, which meant I stepped nearer the officer. If I tell an officer that I’m autistic, and they assume a common misconception that it means I’m more dangerous, does that make it more reasonable for them to be frightened?

After this, I’m afraid of revealing my autism to a police officer, should I be pulled over. I’m afraid of not revealing it as well, because I know I don’t present as entirely typical.

“Reasonable fear” shouldn’t be a justification for killing someone, in my mind. Police officers are there to protect us. If they’re afraid, they can quit the job. I can’t quit being autistic. I can’t quit being pulled over if I match a description. They have every right to defend their own life, but at the very least I think the hurdle should be more than “any officer would be afraid in that situation.” That makes the standard lower the more poorly trained officers are — the easier they are to spook, the more legally sound acting on that fear becomes.

An officer should not be justified in killing me because he feels uncomfortable with my presence and because I follow the orders he gives, rather than the orders he thought he gave.

I could quote you numbers about police shootings, and try to show you the data, and you and I might interpret it differently. But that’s not what I’m here for. I’m here to tell you how that video made me feel.

After that video, I’m afraid. Because I can so easily imagine it happening to me. And I’m pretty sure I shouldn’t be afraid of our own police force. But I am.

Welcome to the Louden on Autism Q & A: Volume 2. Over the course of the next few months, I’m going to be using questions submitted by my website visitors, readers, autism advocates, parents and others to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.

This week, I received a question about struggles with school and an issue with discipline.

QUESTION

My son is 13 and very high functioning. We have struggled with school mostly, but have not had many problems at home. My question really involves discipline. When he is argumentative, he gets extremely disrespectful with school staff. He thinks the teachers are attacking him. So when he tells me what he thinks they meant or even what he thinks they said, how do I give consequences for his reactions? He truly believes he was defending himself and I feel bad punishing him. Any suggestions?

ANSWER

This is a difficult question to answer from the outside. Often a lot of negative feedback, such as removing privileges, can be less helpful in changing a behavior that is seen as “self defense.”

It simply feels like it’s unavoidable – you’re either punished by your parents, or you suffer in the other situation. Neither situation keeps the person from suffering. In fact, this can sometimes lead to someone being more defensive — it’s hard to trust and open up to someone who you truly believe is “not on your side.” And it can also be hard to view someone as on your side when you see them as punishing you for trying to keep yourself safe — either physically or mentally.

Instead of changing the behavior by punishment, my recommendation would be to try to understand more deeply where the disconnect is. Does he not do the work, or is it just a matter of “respect?” If it’s what the school staff considers respect, then you need to think about whether or not they are adequately adjusting their expectations for someone on the spectrum who may struggle with typical social expectations.

When you live with autism, the world can seem like a very dangerous place. You often feel like everyone is “ganging up” on you because they have expectations that you can’t understand. And much like in your case, people punish your son when he fails to meet those expectations.

If someone says, “I explained it” and you say, “but I didn’t understand” then you’re punished for not understanding, even though you have a disability. Might they be in the wrong for failure to explain more clearly? This is rarely the case.

Because of this, trust can be very difficult to come by, and easy to break. My recommendation, then, is to look for ways to talk with the educational staff about fostering and increasing trust, and try to minimize punishments unless it’s clear there’s a real, conscious choice to do wrong. Poor behavior with intent is very different from a failure to understand.

Welcome to the Louden on Autism Q & A series. Over the course of the next few months, I’m going to be using questions submitted by my website visitors, readers, autism advocates, parents and others to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.

Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way. But either way, I hope you enjoy the Q & A.

This week, I received a question about advocacy — how I do it, why I do it, and why there aren’t more people with autism out there advocating?

QUESTION

Why have so few successful autistic people come forward besides Temple Grandin to do what you are doing?

ANSWER

It’s very difficult. At the base level, most people can’t afford to do it. I wouldn’t be able to make a living from it, and I am only able to continue because of financial support from my parents — they feel that the message is important, so I’m thankful. Temple Grandin was fortunate enough to be able to graduate college and have a career. After that, advocacy is a difficult process. In some ways, it’s confrontational – you’re challenging beliefs people had and trying to change them. I often meet people who argue with me that I don’t seem autistic. Many of us have spent our lives being worn down, and if we manage to get to a level where we can get by, we don’t want to go out and make it worse for ourselves by having to confront people.

Assuming you have the financial means and personality for advocacy, you also have to have the communication skills. Even neurotypical people rarely have the communication skills to explain complex topics about their own thought processes and experiences. That’s why organizations like Toastmasters exist, to help people learn the techniques and skills to communicate effectively. Many of us with autism wouldn’t really think about going into a situation like that, one that feels largely social, to try to develop those skills. It only occurred to me after years of advocacy as a means of improving my skills, and I haven’t done anything like it yet. While, speaking diagnostically, autism is specifically an impediment to social communication, this can result in communication delays in general or uncertainty in general communication, so you have to be one of the autistic individuals who either overcomes that or doesn’t struggle with that delay.

Very few people who have disabilities go out and advocate for those disabilities — it’s very difficult. Most people just want to find a way to live their lives, and advocacy can add a whole new set of challenges. Autism, unfortunately, presents some unique additional challenges that make advocacy more difficult. You always have to put your own personal mental health first. So for many people, advocacy simply isn’t the right choice, because adding the additional challenges on top of how difficult daily life can be may just be too much. I’ve had to take a step back from my activities in the past, the radio show, and other things because I just couldn’t manage it. Sometimes retreating for months at a time was the best thing for me.

It’s just hard. And it’s not right for everyone in the first place, so the right combination of events has to lead to it. There are a lot of people with autism out there advocating on their own, locally, in their own spaces, but on top of everything else you also have to land in a situation where there are people who can help you spread your message on a larger scale.

It takes a lot of luck, really. That’s the short of it. Some of us got lucky, many of us are still working just as hard, or harder, to help people understand, but haven’t had the same opportunities.

It looks like there are going to be multiple causes for autism. One day, when we finally say this is what causes autism, a lot of the causes are probably going to be genetic. I think people are going to say, if you and your husband or wife has certain genes, then your child is 80 percent likely to be autistic. We’re probably also going to say that if you have these nutritional problems while you’re pregnant, your child is likely to be autistic. Simple, understandable things like those.

We may also say that for example, it’s looking like if you live near places where lots of pesticides are used, or if you live close to farms, well, then you have a higher rate of autism. But it’s not a guarantee. We know that heavy pesticide use in an area correlates and that doesn’t necessarily mean pesticide causes autism — it just means that something related to that whole process correlates to a person having autism.

A CURE

In talking about a cure, part of a cure is prevention. If we can stop the causes from ever infecting, then you’re stopping 10 percent or 20 percent of people who would eventually be born with autism. But, keep in mind, you have nutritional causes, bacteriological causes, and immunological causes. With these causes, you’re going to be looking at supplements, or nutrition, or interesting therapies we might have in the future. This might also include genetic therapies, or other things that I believe can probably help to cure just about anything.

I would say that banking on a cure in your child’s lifetime is probably a mistake. Cures are being worked on by brilliant people, but a lot of the best cures are going to be the ones that are going to be applied before the child is born.

VACCINATIONS?

The rate of autistic people in vaccinated people and the rate of autistic people in unvaccinated people is so close to being the same that there’s no statistical difference. It is possible that we know that autism does correlate to some physical conditions. Often, you hear the stories of the child who went to get vaccinated, and then they came back and they were withdrawn and they seemed autistic.

A lot of times the parents of these children will say that he or she was withdrawn right after the visit, and there’s not enough time for whatever is in the vaccine to even affect them in that time period. What there is time for is the shocking experience of going to a waiting room, having something shoved up your arm, bright lights, and cold medical implements.

If someone is on the autism spectrum or maybe mildly on the autism spectrum, this could be a traumatic experience just as a life experience that could cause them to withdraw further and cause the parents to finally notice the symptoms that they weren’t looking for before. Because after something like a vaccination, you’re watching and paying more attention to your child to see if they get a fever or if they have any of the other side effects from vaccinations. This is a time when a parent is extremely watchful and most likely to spot the symptoms of it.

You hear these stories, but a lot of times there’s no evidence that it was the vaccination that caused it, just that at the time of the vaccination, which also tends to be the age when autism signs start to show up. It’s just one of those things that is frightening for parents and there are a lot of parents who see these things and share stories with other parents, but the evidence on vaccinations is not there to back it up.

ACCEPTANCE

Overall, there is no cure for autism. There are no magical vaccinations. I truly believe that our time is much better spent on trying to enhance the lives of people with autism, and accept the fact that they may live a different life — rather than trying to “cure” them of their autism. People with autism are amazingly smart and successful in all avenues of life. It’s important to remember that all of us on the spectrum don’t need to be cured, we just need to be accepted for who we are and the ability we have.